7 January 2011

The Last Two Months

The last two months have been very strange. For most of the time, I've felt like I was somnabulating wearily through a dream world, never fully engaging with anything going on around me. So successful have I been in compartmentalising my fears and feelings, that I've grown increasingly concerned about the dam eventually breaking and submerging me in an inescapable torrent of emotion. Fortunately, I've also managed to stow away that increasing concern as well.

I've spent a ridiculous amount of time sleeping uncomfortably on the sofa at my father's house, travelling to and from the hospital, watching both the leukemia and chemotherapy take their toll on his body. Despite his strength, composure and stubborn tenacity, not even he has been able to shrug off the effects, although I suspect the real strain has been psychological rather than physical. Confined to an isolated room for the best part of six weeks, he became petulant, grumpy and unappreciative of the efforts being made on his behalf. Whilst both myself and Carol, his partner, appreciated that it was clearly very difficult for him, it didn't make it any easier for us.

One particular incident involved his Public Carriage Office licence that was up for renewal. Due to his inability to attend the optician's, a particular form couldn't be completed so, in an effort to buy some more time, I wrote an email to the PCO explaining the situation and asking for an extension to the deadline. They acted with an astonishing lack of sympathy and promptly wrote to my father demanding the return of his licence and badge within 7 days or they would revoke it entirely.

This, of course, was entirely my fault. My father blamed me for sending an email to them and was convinced that he would now have no job to go back to. Although I understand that it's important for him to have something to aim for - a successful return to work - I couldn't help thinking that there were more important things to consider first, namely his return to good health. Nonetheless, I was angry at his disappointment with me, although I couldn't show it of course. I've made a concerted effort to be as supportive as possible and if I tore him off a strip it would help neither one of us. So I simply accepted the accusation and its associated guilt.

The first round of chemotherapy progressed and his body grew weaker. Hair started to come away from his scalp in clumps. He lost over a stone in weight in just two weeks. Weariness etched itself into his face. The words 'Leukemia' or 'Cancer' didn't scare me. They are, after all, only words and hold no power. Instead other words, and their physical and emotional manifestation, upset and terrified me: 'Frail', 'Helpless', 'Scared'. These things that had become such an integral and encompassing part of his time in the hospital room, were what frightened me the most. To see him shrink and wither was heartbreaking.

After another week and a half on the sofa, I decided to go home for a week to recuperate and make sure my flat hadn't burned to the ground in my absence. Packing my suitcase, I excitedly boarded a bus, then a tube and, finally, a train. As I sat down on the Southend-bound train, I was surprised to find my initial excitement had drained like someone pulling the plug in a bath. Watching the snowy countryside flash by outside, I realised that what had been pleasure at the thought of going home had become agonising guilt that I was abandoning him while he was at his lowest point.

At home, it wasn't the oasis of peace and calm I'd expected. My usual pastimes of watching movies or playing flash-games on the laptop seemed to lose their entertainment value. I became acutely aware of just how much of my life I was wasting on unimportant, totally valueless activities. I only managed a few days back at home before I realised that I had no other choice than to go back to London to be with my Dad.

The chemotherapy did its work and stopped the bone marrow from producing blood cells. The next step was for the bone marrow to gradually start producing cells again. Unfortunately, this didn't happen. The doctor's explained that they would administer a drug to kick-start blood cell production but that this would very likely mean the bone marrow would go back to producing leukemic cells too. Essentially, this would put us back to square one. Strangely though, this didn't matter to us because we were more interested in one thing - getting him back home for Christmas. In the grand scheme of things, we felt this was more important to his psychological well-being.

On Christmas Eve, I left the office early and went to the hospital. As my father slept on the bed, I sat in a chair and did some work, waiting to hear that they were letting him out for Christmas. Several hours ticked by and then I received a work phone call which I took outside in the corridor. Re-entering the room, I was shocked to see my father dressed in his going-home clothes and packing a bag. While I was outside, the doctor had come in and informed him that he could go home. Armed with a bulging carrier bag of medication and injections, we left the hospital together.

Christmas, if I'm completely honest, was a rather boring affair. We all sat around, tired and listless. After so much rushing about, so much time and energy consumed, we were all exhausted. I cooked Christmas dinner and we ate it gratefully but with little real pleasure. It was, however, wonderful to watch my Dad enthusiastically demolish a bowl of ice cream, savouring every delicious mouthful. Despite telling myself that this was quite possibly the last Christmas he would see, I was unable to delight in the fact; something that I still haven't figured out yet.

To fast-forward to the present, I took the day off work today. I haven't been sleeping well, even though I'm at home and have the comfort of my own bed. Last night, I was unable to get to sleep until 2.30 am and, even then, what sleep I did have was fractured and did nothing to restore me.

Then, this morning, I received a phone call. My Dad informed me that the hospital had been in touch with him to discuss the results of his latest bone marrow test, an awful procedure where they literally corkscrew a sliver of marrow from your hip like Antarctic scientists taking a core sample. The test results showed that the Leukemia had gone into complete remission.

I sat in silence, stunned beyond the capacity for thought. From my initial stubborn refusal to accept that my father would succumb to this cancer, I had gradually started to plan for his death. That may sound morbid, but I deemed it the most appropriate course of action for my own psychological benefit. Pretending everything will be OK works for a while, but must eventually make way for common sense and reality.

Complete remission is a term that means no leukemic cells can be detected with current diagnostic methods. It doesn't, however, mean that there aren't some remaining. This is why he will undertake at least one more round of chemotherapy in a process called 'consolidation' which aims to destroy non-detectable levels of leukemic cells.

Of course, he isn't cured. With leukemia that simply doesn't happen. It may return, possibly in weeks, months or years. There is a hopeful possibility that it may never return for the rest of his life.

But right now, I'll take that wonderful piece of news on face value.

I sat back earlier and thought about my previous blog post, so full of bravado, dripping with optimism, and it made me smile in the same way that you benignly grin when you recall, fondly but with embarrassment, your foolish actions as a teenager. At the time, I had to look to the future and hope for the best, otherwise I was in danger of falling apart which I couldn't allow, for my father's sake. Now, a couple of months later, I look back on it with, to steal a phrase from the late Denis Potter, a tender contempt. And yet, conversely, I was right.

That imagined pint of beer with my father in a July pub garden is so close I can almost taste it.

I'm very happy to ear this news, Dan. But what a long tough haul the last few months have been for you all. Seeing his personality undergo such a change will have made it seem all the more frightening. I that now he can recover some of his old brio - I'm sure he's looking forward to that summer pint just as much as you are.

Kirsty - thank you. It was a wonderful and totally unexpected piece of news. Finally, we can see an end in sight, and not the one that I was carefully preparing myself for. After all this, I may need a holiday...

M - Thank you, chap. Much appreciated. I look forward to returning to Twitter at some point with renewed vigour and thinly-disguised contemptuous disdain. :o)

ISBW - Thank you. Yes, it's been tough for all concerned, but the whole situation has been an oddly positive one. It's made me realise that I seem to have spent a significant amount of time just coasting through my life rather aimlessly. If nothing else, it's caused me to take stock and consider what I should do next in terms of taking some control and living life to the full. It seems like I've spent a lot of time kind of waiting for something to happen and not knowing what it is. Now I feel it's time to start making some plans and achieving some goals. But first, I'll just drink this coffee and play some more flash games...

What a difficult time for your father and you. I read with great interest the different stages you went though. Especially how things so important to you (movies, home etc) became meaningless. The changing emotions along the way, like some kind of terrible roller coaster ride of emotion. A great bit of writing Dan. Great news on your Dad's remission. I hope he continues to grow stronger and you continue to be strong. Look after your self too though, a lot of big stuff sitting there inside you. I hope things continue to improve.

Hello Dan. This is beautifully written (as ever) and I feel your pain and joy even though, well lets be honest, I don't even know you. So I'm delighted to hear your good news - and am looking forward to hearing even more in future.

Carl - Thanks chap. Glad you liked it. I don't normally like to be too personal in my blog posts, but I felt this was one worth writing. I hope to soon be back to normal - ranting like a mofo at some imagined slight or unimportant bugbear. ;o)

EF Rice - Thanks chief. (ooh, work-related pun?) The way I'm looking at it is, the year can only get better. Famous last words... :o)

Cocktails - Thank you. To be honest, I probably won't write about this again other than to bring it to closure at some point. I don't want to bang on about something that many other people have been through. Plus, of course, I'm sure people are starting to miss my miserable, self-obsessed rants. :o)